Friday, July 31, 2015

February 6, 2015 was a disastrous day for Canadians with disabilities - not just for them - but for all disabled people everywhere, and all people made vulnerable by the fact that they are facing end-of-life decisions.

Disabled people must resist what is the biggest threat we have seen to our lives to date, written into a legal judgement. So must everyone else: this is about the kind of society we all want to live in.

Within the SCC judgment, there are deeply flawed assumptions about human life and living in general, and specifically about what it means to live with a disability. There are significant factual errors also.

Disabled people opposing the legalisation of euthanasia/assisted suicide have never doubted that some disabled people will reach a view that ‘they cannot go on like this’. But despair is not confined to those disabled people, or people who are gravely ill, or people who feel they have ‘lost everything’.

Why then single out disabled people as a ‘special group’ amongst all those who will consider taking their own lives at some point? Disabled people are not a ‘homogenous group’ – we reflect the whole cross-section of society (which is why it is wrong to speak of ‘the disabled’). So some disabled people will absorb and reflect the thinking of their time, of their communities, and simply accept that this very public, and very poor debate conducted in the media, must have some force. Others will reflect more seriously.

Most disabled people do not count their lives as ones of unmitigated or ‘irremediable’ suffering. Our despair comes, not from being disabled per se, but from the institutionalised discrimination we must battle on a daily basis, being excluded from living independently, bombarded on all sides with the idea that we are ‘less than fully-paid-up’ human beings, being forced into poverty, denied basic human rights. Such is the discrimination we face, based solely on the fact that we are disabled, and no more starkly than in having us ‘marked’ for euthanasia by the SCC decision in Canada.

There are terrible errors of fact in the SCC judgment too:

· The idea that anyone will be ‘forced’ to end their life prematurely - based only on a fear of becoming so incapacitated that they cannot end their own lives - is false.

· Another myth is that even psychiatrists agree amongst themselves about what constitutes ‘capacity’. The idea that there is one assessment which will guarantee this person is ‘competent’ now – and will be so tomorrow and the next day, until the moment they die - is false.

· Many people believe that their loved ones were left to die of starvation and thirst, ‘a most horrible death’. Neglect has meant many such deaths are real. But it is also true that when someone is actually dying, giving food and certain amounts of water, when their organs are failing, increases their final suffering from the human experience of dying. Good palliative care practice in such moments includes keeping the patient’s mouth hydrated with swabs. The proper titration of drugs eases pain.

· So-called ‘advance directives’ are not helpful. Peer-reviewed research shows that people are more likely to express a wish to die post-operatively, and more likely to ask to die the more serious the operation. That ‘desire’ fades as the patient recovers. If a psychiatrist assesses someone post-operatively to have a clear and settled intention to die, they may be ‘right’. But if patients are assessed weeks or months later they often no longer wish to die. It would be too late for those who are already dead. Death removes all choices and the possibility of a change of mind.

But it is not only after major surgery that such thoughts run in patients’ minds: and yet it may not take so long to see things differently.

Imagine a man having lived with a disability caused by trauma or disease, say for over forty years old, who has just been delivered a diagnosis of an incurable form of cancer. Is it not perfectly natural to be devastated? Is it not entirely understandable in such a moment to say ‘Ok, I’ve had enough now’ and to ask ‘What happens if I do not take the treatment?’

Is it also understandable that after the initial reaction the man remembers he will meet his daughter for dinner that evening and must consider how he will explain to her and his other children, his wife, his family, his friends that he will not even try to meet this last battle? Every suicide involves other people.

If the doctor reacts to the initial ‘I can’t go on’ with a shrug of the shoulders and says ‘It’s your choice. We have the means. It’s legal now.’ how will that help the terrible end-of-life decisions the man is now faced with?

If the doctor remains clear and gives information about the bodily processes which will take over, absent of treatment, and waits sympathetically, returns later to check the patient’s thought-processes, allows for shock and grief to pass – even the tiny bit of time necessary for some re-balancing in the man’s unbidden reactions - is this not a more compassionate response?

Evidence shows that the main reason people give for wanting to die is not to be a ‘burden on others’. It is hard to suffer; it can be harder to watch a loved one watching you suffer. That is a critical part of our human experience. Their sense of powerlessness, loss, grief, impending doom, their exhaustion, their very love, all play a part, mixed at times, worse one time than at another, confused and sometimes even unrecognised.

The SCC judgment also says:

The prohibition denies people…the right to make decisions concerning their bodily integrity and medical care…by leaving them to endure intolerable suffering, it impinges on their security of the person.

There is no definition of ‘intolerable suffering’. Certainly some people may hold to one decision as to another, but the lie in this court ruling, is that there is anything to be described as ‘bodily integrity’ or that it ever makes sense to say ‘It’s my body’ or any of the usual formulations of that idea. No-one can own their body – we can own a house or a coat or a car. The problem is that this looks like a meaningful sentence – it is actually nonsense. It is a corruption of the concept of ‘ownership’ which has come to be accepted without reflection. And yet on such nonsense are court rulings of such magnitude built.

So the real question always becomes – who is such a law for?

It is for the protection of doctors, family members, others who are willing to provide suicide assistance.

The majority of doctors do not want any part in ending the lives of their patients. The majority desire to ease suffering. So those who want to participate in taking the lives of other human beings must be forced to explain their motivations.

There are far too many nuances in human and family life to ever be clear who is influenced by their supposed loved ones to come to want die. But there are also those who feel they are acting genuinely from love and compassion. Is such a law for them too?

I hope that our first response to someone who says ‘I want to die’ is always to help him out of despair, verify and treat depression, succour him to a different perspective on his life, its value. I fear the hope is often in vain.

If someone with Spinal Muscular Atrophy[1] says ‘I despair of my life and my future’ why then is the (supposedly) humane response to put a ‘legitimising’ arm around her shoulder and say

‘Well, after all these years, you have done enough. We all understand why anybody in your situation, should want to die. We would, in your place. Look how it will ease your family’s pain and burden. So yes, absolutely, we will do everything we can to help you to commit suicide. We have a lethal dose of drugs waiting’?

What about her husband, her family, her friends, her job?

That reaction and it may indeed sometimes be (mistakenly) thought of as one of simple human compassion is based solely on discrimination towards disabled people as disabled people. The condescension in it is worst of all.

That’s where the dangers lie. As we keep saying, it is not the fact that individuals should ever reach a decision to die that is at stake here: it is the consequences of legalising such a reaction to the decision that matters.

The false belief that has taken root is that suicide is (still) bad but euthanasia/assisted suicide is good, especially for disabled people who ‘should want to die.’

[1] As Baroness Jane Campbell, the longest survivor in Britain with SMA, has pointed out, the proposed legislation puts her ‘in the waiting room’ so that one day when she is feeling low what would stop any doctor from responding to her request to die? (House of Lords debate, Hansard 17 July 2014 – I paraphrase only a little for the sake of brevity).

Concerns of bias in a panel appointed to lead efforts in dealing with the Supreme Court of Canada’s historic lifting of the prohibition against assisted suicide are unfounded, given that the fundamental issue of whether the practice should be decriminalized has already been decided, says Toronto health and human rights lawyer Hugh Scher.

The panel, appointed by the Harper government, will be led by Dr. Harvey Max Chochinov, an international leader in palliative care and the study of dignity at the end of life. His expertise and qualifications are unparalleled anywhere in the world, says Scher.

Dr. Harvey Chochinov

His fellow panellists are disability rights expert Catherine Frazee, professor emeritus at Ryerson University and former Chief Commissioner of the Ontario Human Rights Commission, and Benoit Pelletier, an expert in constitutional law at the University of Ottawa and former Quebec cabinet minister, reports the National Post.

Both Chochinov and Frazee were expert witnesses called by the Canadian government to give evidence and reports in the Carter assisted suicide case that eventually made its way to the Supreme Court. A review of the decisions by all levels of court in the Carter case praise the expertise and evidence led by these two witnesses, which was virtually unchallenged at trial.

Catherine Frazee

The panel will conduct online consultations with Canadians and key stakeholders on possible options to the high court’s ruling and report back to the government by late fall, likely after the October federal election, says the report.

The group will focus on which forms of assisted dying should be permitted — assisted suicide, where a doctor prescribes a lethal dose of a drug the patient takes herself; voluntary euthanasia, or death by lethal injection — eligibility criteria and safeguards to protect a doctor’s “freedom of conscience” not to participate against his or her moral or religious objections, reports the Post. Whether assisted suicide is health care or medical treatment, or whether it should be separated from medical treatment, is a serious issue that will need to be canvassed by the panel in light of feedback from the public and expert stakeholders.

“The formation of the panel is a responsible and sensible approach in terms of giving the government the opportunity to hear from Canadians, stakeholders and experts from all sides as to the various difficulties and challenges that are sure to be encountered through any system that seeks to decriminalize assisted suicide and impose a level of safeguards to enforce the ruling of the Supreme Court of Canada,” Scher tells AdvocateDaily.com.

“In that vein, I would say that this panel displays a level of expertise that is of the highest quality in the country. Dr. Harvey Chochinov is known the world over as one of the leaders in palliative care and the study of dignity at the end of life and he’s generally regarded as one of the world’s leading experts on that fundamental topic. Catherine Frazee is a leader in the disability rights movement and has been for years. Her depth of knowledge and understanding of these issues spans decades.”

Constitutional considerations, says Scher, will be extremely important as the panel begins its work.

“Given the medical, human rights and constitutional background that each of these panel members collaboratively bring to the table, I believe that they are extraordinary choices to facilitate a discussion and dialogue with Canadians on all sides of this issue relative to the considerations that should go into the application of the Supreme Court’s ruling in the formation of a law that seeks to give effect to that ruling,” he says.

“One must remember that the issue of the decriminalization of assisted suicide has been determined by the Supreme Court, so these panel members are not being called upon to advocate for one position or another on the issue. The issue has been determined. What’s at issue now is how to give effect to and implement this ruling in a way that accords with both the terms of the ruling and the concerns of stakeholders on all sides.”

“Their role is to facilitate the receipt of cross-country feedback and discussion relative to what should be implemented in order to give effect to the Supreme Court ruling, including with respect to such matters as ensuring the voluntariness, consent and capacity of people seeking an assisted suicide,” says Scher.

“The panel will also take into consideration the need to protect against the risks of abuse, particularly for vulnerable communities and members of society including, most notably, people with disabilities and seniors. They will have to ensure that the mechanisms put into place to give effect to Supreme Court ruling are in keeping with the utmost considerations of dignity, equality and respect for the individual, the common good and the public interest.”

While it’s unclear at this time which government may ultimately be receiving the panel’s recommendations, “any government of any political stripe would benefit from the advice and recommendations of a panel of this level of expertise and prominence with their depth of knowledge, insight and facilitation skills,” says Scher.

“They are there as a facilitating messenger in order to advise. They are not there to make any particular decisions, especially on the fundamental issue of decriminalization of assisted suicide, which the Supreme Court itself has already determined.”

In February, the Supreme Court struck down the Criminal Code prohibitions that ban physician-assisted suicide in certain express circumstances and gave Parliament one year to legislate new rules to give effect to the ruling.

Davies, focusses on the effect of legalising assisted suicide in the UK. For instance Davies responds to Marris's assertion that assisted suicide is happening already. From the article.

Mr Marris will be aware that breaches of the existing law in this area are rare. Less than 20 cases a year cross the desk of the DPP throughout the whole of England and Wales. However, he tells us that "terminally ill people are ending their own lives" and that "some doctors are complicit in hastening patients' deaths".

Glyn Davies MP

The claim about terminally ill patients ending their own lives rests on an extrapolation of data from just seven out of 139 health authorities. Even so, the number is dwarfed by the death rate from legalised assisted suicide in Oregon. Oregon's death rate from this source last year is the equivalent to over 1,500 assisted suicide deaths in England and Wales if we had a similar law here. And it is Oregon's law that is the model for Mr Marris' bill.

As for the claim that doctors are already engaging in hastening patients' deaths, I can do no better than quote the words of Sir Graeme Catto, Chair of the campaigning group Dignity in Dying (formerly the Voluntary Euthanasia Society). He told Mr Marris' meeting last week that "that is highly unlikely" because "doctors now work in teams and it is very hard to get one-to-one contact". In fact, Sir Graeme was only confirming independent research, which has concluded that covert hastening of deaths of patients by doctors in the UK is "rare or non-existent"

Davies then points out that Marris's assisted suicide bill is based on arbitrary criteria. From the article.

... The essential question before Parliament is this: do you want to license doctors to involve themselves in deliberately bringing about the deaths of some of their patients? Most doctors don't want that.

All these 'assisted dying' bills rest on purely arbitrary criteria - like terminal illness (but not chronic illness or disability) and assisted suicide (but not administered euthanasia). Their boundaries are irrational and therefore permeable. That is why so many people are worried about the thin end of the wedge. This is a road down which we should not go.

Chairperson Alexander, Members of the Committee on Health and Human Services:

John Kelly in Connecticut.

I am the director of Massachusetts Second Thoughts: People with Disabilities Opposing the Legalization of Assisted Suicide. We were the progressive voice in Massachusetts that helped defeat the assisted suicide ballot question in 2012, and again in the legislature last year. Our opposition is based in universal principles of social justice that apply to everyone, whether disabled or not. Drawing on those same principles, we supported the medical marijuana ballot question in 2012 of the relief it brings to many disabled people.

We chose our name Second Thoughts because we find that many people, once they delve below the surface appeal of assisted suicide, have “second thoughts” and oppose it. In Massachusetts a month before the election, 68% of voters supported the ballot question. But just as closer looks in Massachusetts – and this year in Maryland, California, Connecticut, among other states –– led to a considered rejection of assisted suicide, we urge you to reject B21-38 because of the real-world threats it poses.

If this bill passes, innocent people stand to lose their lives without their consent, through mistakes and abuse. There are no safeguards now in place or ever proposed that can prevent this tragically irreversible outcome.

Doctors misdiagnose and give incorrect prognoses, frequently. In the disability community, we have many members who have been given a terminal diagnosis, some since birth, some more than once. One Second Thoughts member, John Norton of Florence Massachusetts, was diagnosed with ALS (Lou Gehrig’s disease) in his first year of college – in 1955. He was told he would die in 3 to 5 years.

As a very physical person, a high school athlete, John was devastated by the diagnosis. As he began to lose function, he wrote:

I became depressed and was treated for my depression. If instead, I had been told that my depression was rational and that I should take an easy way out with a doctor’s prescription and support, I would have taken that opportunity.

Then something happened that doctors are never able to predict: six years after diagnosis, the progression of his disease stopped. Today, his condition is about the same. He is married, with three children and a grandchild. Now retired, he writes:

We have wonderful friends. I enjoy singing tenor in amateur choruses. I help other people by working as a volunteer driver. I will be 75 years old this coming September [2012]. If assisted suicide or euthanasia had been legal, I would have missed the bulk of my life and my life yet to come.

With legalized assisted suicide, this incorrect information would have cut short John Norton’s life. Studies have shown that 15-20% of the supposed “terminally ill” outlive their prognosis, leading to our current situation whereby hospice programs discharge 200,000 people per year. Every year in Oregon, reports show people living longer than a year after the suicide request.

Elder abuse, typically by adult children and caregivers, is an epidemic in every state. It is estimated that one out of every 10 people over the age of 60 is abused every year. With assisted suicide legal, there will inevitably be opportunities for foul play. Someone in line to inherit estate proceeds will be able to witness the written request for assisted suicide, pick up the prescription from the pharmacy, and even administer the lethal dose themselves – who would know? Since providers or disinterested witnesses are often not present at the death, we can’t know how people are actually dying. Last year in Oregon, 80% of program participants had no provider present when the drugs were administered.

Proponents talk a lot about pain and suffering, and cite polls that ask respondents whether they support doctors prescribing lethal medication to people about to die in unbearable pain. But the talk about pain is part of a simple bait and switch: terrify people with the prospect of dying in unbearable agony, then implement a program that prescribes suicide for mental distress.

The leading reasons for suicide requests cited in the Oregon reports by prescribing doctors are all about mental distress: feelings of lost autonomy, missing valued activities, feelings of lost dignity, distress about incontinence, and feeling like a burden. Pain (and fear of pain) is a trailing indicator.

Assisted suicide actually has much to do with the views of other people. Dignity, never defined in any of these bills, is defined as “the state or quality of being worthy of honor or respect” – of other people. When people feel that their very existence is burdensome to others, they are experiencing lack of respect. Proponents exploit this fear by threatening people that their legacy will be memories of debility rather than accomplishment.

Disabled people reject these notions as insulting and dangerous. Dignity is inherent. For these reasons and more, every leading national disability rights group that has taken a position on the matter has gone on record in opposition. And that is why 12 Massachusetts disability rights organizations have come out against legalized assisted suicide.

Instead of creating a new medical treatment called “death with dignity,” let’s ensure that people have the in-home supports necessary to live in dignity. Old, ill, and disabled people deserve care that does not burden family and caregivers, care that includes mental health support for feelings of demoralization and depression.

Finally, opponents of assisted suicide have long warned against the incrementalist strategy of proponents to expand the reach of Oregon-style laws. We don’t need to cite the example set by countries like Belgium and the Netherlands (euthanasia for depression, fear of blindness, even tinnitus, not to mention the “mercy killing” of disabled newborns) to lend credence to these warnings. We can simply point to the proposals and statements by true believers at home.

John Kelly debated Marcia Angell

A broader agenda was revealed by Oregon law co-author Barbara Coombs Lee last fall at a Connecticut forum. As the online journal CTNewsJunkie reported, “Coombs Lee also said the [Oregon-style] legislation would exclude people with dementia and cognitive declines, since they could not make the choice for themselves. ‘It is an issue for another day but is no less compelling,'” she said. Coombs Lee is now the president of the group Compassion & Choices, the saccharine rebranding of the old Hemlock Society.

Leading Massachusetts advocate for assisted suicide Dr. Marcia Angell now writes in favor of euthanasia. In Oregon, a bill has been submitted to extend the meaning of “terminally ill” from 6 months to 12. Once doctor-prescribed suicide is defined as a “benefit,” it is only natural to extend that benefit to more and more people, for more and more time.

A Medical Daily report, concerning the same study also focussed on the drugs that are used for euthanasia in Belgium.

The Medical Daily report explains that the euthanasia drug of choice in Belgium was banned by the European Union to stop executions in the United States. From the article:

To end their lives usually at home or in a hospital, the majority used sodium thiopental, the researchers reported. This barbiturate, ... is commonly known as the first of three lethal injection drugs administered to American prisoners who are executed under a death sentence. In 2011, Hospira Inc., the only company still making the drug at that time, stopped production at its Italian plant when the European Union banned export of the barbiturate as a way to end executions in the United States. However, this same drug has been chosen as Belgium’s standard protocol for euthanasia.

The study indicates that people with disabilities are far more likely to die by euthanasia for psychiatric reasons. According to the study euthanasia for psychiatric reasons included people with Autism and people with eating disorders. From the study:

Most of the patients suffered from a treatment-resistant mood disorder (n=58, including 48 with major depressive disorder and 10 with bipolar disorder) and/or a personality disorder (n=50), while 29 patients had both.

We are a society of public policy promise breakers. Advocates for radical transformations in law and culture promise their proposed changes will be constrained and regulated by strict guidelines.

Then, when the policy becomes law, it is often Katy bar the door and the old promises are forgotten.

That pattern has not played out with organ transplant medicine. Yet.

Not for lack of trying. Many in bioethics and the transplant field want to break the important promise solemnly made that vital organs would only be taken from patients who are dead. This is known as the “dead donor rule.”

The latest promise breaker pusher is Walter Glannon, a Canadian bioethicist, writing in the philosophical journal Aeon. First, Gannon says honoring patient choice to be killed and harvested is more important than that the patient actually be dead first.

Glannon has a whole list of people who could be killed for their organs. First sophistry, taking kidneys before death, and pretending it doesn’t actually cause death. From the piece:

In a protocol developed by the transplant surgeon Paul Morrissey at Brown University in Rhode Island, for instance, kidneys can be taken from patients while they are alive because doing this does not cause brain death or heart death. Death is declared after the kidneys, and then life-support, are removed. This scheme applies only to kidneys, though, and is thus limited.

I was unaware this is happening. If so, “scheme” is the right word since it is crass sophistry that pretends that the taking of the kidneys would not cause death. Ironically, kidneys don’t deteriorate as fast as other organs. So, this seems to me a gambit to destroy the DDR. It should be stopped.

Superior Court Judge Gregory Pollack said the case was not about the “right to die” but whether a law making assisted suicides in California illegal was constitutional. Pollack said appellate courts and the U.S. Supreme Court have made a distinction between “letting a person die and making a person die.” “You can’t do that (make a person die) in California,” the judge said

Lest anyone cheer too loudly, the other case was filed in San Francisco–where anything can happen.